Joint Standing Committee on the National Disability Insurance Scheme
17 August 2017
Joint Standing Committee on the National Disability Insurance Scheme PO Box 6100, Parliament House Canberra ACT 2600 ndis.sen@aph.gov.au
deeply regretted. Dear Sir/Madam,
Carers NSW wishes to thank the Joint Standing Committee on the National Disability Insurance Scheme (the Committee) for providing an opportunity to comment on the transitional arrangements for the National Disability Insurance Scheme (NDIS).
Carers NSW is the peak non-government organisation for family and friend carers in New South Wales (NSW) and a member of the National Network of Carer Associations. Our vision is an Australia that values and supports all carers, and our goals are to work with carers to improve their health, wellbeing, resilience and financial security; and to have caring recognised as a shared responsibility of family, community and government.
Carers NSW has been closely monitoring the rollout of the NDIS in NSW since the commencement of the Hunter trial in July 2013. Our focus has been the recognition of carers in policy and practice and the experience of carers engaging with NDIS processes. While many families are experiencing positive outcomes from the NDIS, we also have heard from many carers who have experienced confusion, exclusion and inadequate support.
The National Network of Carer Associations has identified a range of design and implementation issues affecting carers of NDIS participants nationally, however given that this particular inquiry relates to the transitional arrangements for the NDIS, which differ between jurisdictions, this submission focuses on particular features of the NSW rollout which we have found to be problematic for carers.
Thank you for accepting our submission. Should the Committee require any further information, please do not hesitate to contact Sarah Judd-Lam, Senior Policy and Development Officer, at sarahj@carersnsw.org.au or on (02) 9280 4744.
Yours sincerely,
Elena Katrakis Chief Executive Officer Carers NSW
Carers NSW submission:
Transitional arrangements for the
National Disability Insurance Scheme
17 August 2017
AN AUSTRALIA THAT VALUES AND SUPPORTS ALL CARERS
INTRODUCTION
The National Disability Insurance Scheme (NDIS) focuses on the needs and goals of individuals with disability, while acknowledging the important role of carers in the lives of participants. A carer is any individual who provides care and support to a family member or friend who has a disability, mental illness, drug and/or alcohol dependency, chronic condition, terminal illness or who is frail. As the peak organisation for carers in New South Wales (NSW), Carers NSW is committed to tracking the experiences of carers in NSW who care for NDIS participants, potential participants and people with disability who are deemed ineligible for the NDIS, to ensure any process issues or service gaps are identified during transition.
This submission draws attention to a range of key issues affecting carers as the NDIS rolls out across NSW. It follows on from our earlier submission to the Committee’s inquiry into the ECEI approach, and will subsequently be followed by a third submission, in relation to the Committee’s inquiry into general issues around the implementation and performance of the NDIS. This particular submission focuses on aspects of NDIS transition that appear to be unique, or particularly challenging, in the NSW context.
The issues and recommendations identified in this submission draw on the responses of 109 carers who were caring for an NDIS participant at the time of responding to the Carers NSW 2016 Carer Survey, three focus groups comprising 18 carers of NDIS participants, and more than 70 case studies recorded by Carers NSW staff via our Policy Advice Form system since the commencement of full rollout in NSW, as well as anecdotal feedback gathered by staff from carers and service providers in the course of our work.
1. NSW ROLLOUT
1.1 Hunter trial site
The NDIS commenced in NSW on 1 July 2013 as part of a three year staged trial across three local government areas (LGAs) of the Hunter region: Newcastle (2013-14), Lake Macquarie (2014-15) and Maitland (2015-16). NSW was the first state or territory to sign up for the NDIS and one of four jurisdictions to deliver a trial from 2013. At the completion of the trial in June 2016, around 10,000 access requests had been lodged in these areas, resulting in over 7,600 approved support plans.1
The NSW trial, unlike trials in other jurisdictions, was open to all eligible people with disability in the identified LGAs under the age of 65. The Heads of Agreement with the Commonwealth, signed in December 2012, anticipated the complete withdrawal of the NSW Government from disability support.2 Of all the States and Territories, NSW was, to our knowledge, the only one to intend this from the very beginning.
1.2 Transitional arrangements
NSW Parliament enacted legislation in 2013 to provide for the corresponding devolution of the NSW Government Department of Ageing, Disability and Home Care (ADHC), now part of the Department of Family and Community Services (FACS). The NDIS (Enabling) Act 2013 set down the conditions by which ADHC staff and assets would gradually be transferred to the non-government sector.
Prior to the release of detailed statewide transition plans, in May 2015 the NSW Government delivered on an election promise to commence an early rollout of the NDIS in the Penrith / Blue Mountains area of Greater Western Sydney. Up to 2,000 children and young people under the age of 19 would be transitioned into the Scheme between 1 September 2015 and 31 June 2016.3
1.3 Statewide rollout
In September 2015 the NSW and Commonwealth Governments formalised the negotiated transitional arrangements for the NDIS in NSW in a Bilateral Agreement, which stipulated that the NSW transition would be completed by 31 June 2018, following a staged geographical phasing in of existing clients of particular ADHC services.
Approximately 78,000 existing ADHC clients are expected to have transitioned to the NDIS by 30 June 2018, along with an additional 63,000 new and other participants by 30 June 2019. Despite having the largest relative population, the NSW rollout timetable has been the most ambitious of any jurisdiction. Carers NSW believes the rapid and large scale rollout of the NDIS in NSW has been a key contributing factor to the issues identified in this submission.
2. INTERFACE WITH MAINSTREAM SERVICES
The arrangements between the NDIS and other service systems during NDIS transition in NSW are laid out in Schedule I of the Bilateral agreement between the Commonwealth and New South Wales for the transition to an NDIS, formalised in September 2015. This schedule highlights the potentially adverse impacts of cost-shifting, duplication and service gaps for participant outcomes. Attachment A details the high level principles agreed by the Council of Australian Governments (COAG) in 2013 in relation to eleven service systems. Of the service systems addressed in Attachment A, Carers NSW has identified the interfaces with health and transport service systems as the most problematic for carers in NSW.
2.1 Health interface
2.1.1 Service gaps
In NSW, public hospitals, community health services and other public health services, including allied health services, are operated statewide by a network of 15 geographically based local health districts (LHDs) as well as a series of specialty networks and non-government organisations. Together these services are known as NSW Health.
NSW Health has historically provided a range of specialist services to NSW residents with disability, largely through two programs. The first of these key programs is the Community Care Supports Program (CCSP), funded by ADHC. The CCSP replaced Home and Community Care (HACC) funding for those under the age of 65 years in NSW following the separation of aged care and disability funding between Commonwealth and State and Territory governments in 2012. Some LHDs have received CCSP funding in order to provide people with disability under the age of 65 with locally based services such as case management, allied health, community nursing and social support groups. When ADHC ceases to exist on 30 June 2018, this funding will no longer be available.
As CCSP funding is withdrawn from the health service system, key gaps are emerging.
Without this funding, LHDs will be unable to maintain the service types listed above for NSW residents ineligible for an NDS package. The ineligible group includes many people with disability who have complex needs, but whose disability is either not ‘permanent’ or ‘significant’ enough to meet the NDIS eligibility criteria, or is a functional impairment resulting from a chronic illness that greatly affects his physical functioning. They previously received in-home support services, ttransport and respite services,Clients of ADHC funded services are eligible for continuity of support via the Pathways Project, delivered by non-government organisation Our Care, if they are found ineligible for the NDIS. However, there is no evidence that the Pathways Project will include anything other than capacity building and linking supports, which will be inadequate for people still requiring more intensive supports like case management or allied health services. Secondly, in order to qualify for the Pathways Project, a person must have applied for the NDIS and been denied access. In consultation with our LHD contacts, Carers NSW believes this is an inappropriate requirement, as clients of some CCSP supports will evidently not be eligible, for reasons indicated above, and it would be a waste of everybody’s time for them to apply.
Unless the CCSP funding previously used by the health system is replaced, a significant population of people with functional impairments risk losing out on much needed support.
Recommendations 1 & 2:
Carers NSW recommends that the Committee advise the NSW Government that:
- applying for the NDS should no longer be an absolute requirement for accessing the Pathways Project;
- NSW Health should receive additional funding from 1 July 2018 ongoing to account for the loss of CCSP funds.
As we raised in our recent submission to the Committee’s inquiry on the ECEI approach, Carers NSW has also had reports from carers and service providers in various parts of NSW that allied health and early intervention services are either no longer available, or in short supply, as families wait indefinitely to access support from their local ECEI provider. Families who have been able to access private therapy through Better Start (BS) and Helping Children With Autism (HCWA) funding packages have, in many cases, used up their funding, reached the maximum age for using funding, or are no longer able to register for this support due to the recent closure of registrations.
Given the importance of timing in early intervention, and the fact that delays could result in significant costs for children, families and the NDIS, allied health and early intervention supports should continue to be available to families until such time as they have active ECEI supports from the NDIS.
Recommendations
Recommendation 3 & 4:
Carers NSW recommends that the Committee advise the Department of Social Services to:
- reopen registration for Better Start and HCWA until delays to accessing ECEI providers are addressed;
- provide top-up grants to existing Better Start and HCWA clients who have used up their funding in anticipation of the NDIS being rolled out in their area.
Recommendation 5:
Carers NSW recommends that the Committee urge the NSW and Commonwealth governments to provide additional transitional funding to health services offering allied health and early intervention support to families waiting to access the NDIS.
life. As noted in the previous section, these sometimes substantial needs are, as a result, left to the health system, which is losing the funding they have previously used to provide alternative support.
NSW has entered its fifth year of rollout, and yet these issues remain unresolved, with participants and families paying the price.
Recommendations 6 & 7:
Carers NSW recommends that the Committee put pressure on the NSW and
Commonwealth Governments to:
make and communicate binding decisions about what health related conditions and
supports will and will not be funded within NDIS plans;
commit to providing supplementary funding to the health system to address health
related needs that are not covered by the NDIS.
2.2 Transport interface
2.2.1 Transport costs Ray’s two sons often need to travel to Inadequate funding for transport has been a critical regional centres for specialist care issue for people with disability and their families and and recreational activities, which can Carers NSW has heard from many carers that the take several hours. Ray is concerned levels of transport funding being allocated represent that the transport coverage in their only a fraction of the transport expenses they have NDIS plans will not be sufficient, in any given year. State funded taxi subsidies and meaning that either his sons will miss eligibility for the Companion Card go some way to out, the family will have to pay costly addressing these costs, but are themselves grossly fees, or they will have to drive inadequate compared to the drastic increase in themselves, accruing petrol costs and costs that is reported, especially from people living meaning that they have to wait in regional, rural and remote areas. several hours and miss out on time for themselves.
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The main reason for this discrepancy is that transport was historically included in block funded programs, at little or no cost to the client and their family.
The rollout of the NDS has not only ceased block funding to disability support providers but also significantly impacted the operations of the community transport sector. As a result, many David and his son Jeremy live in a rural area. Five days a week, Jeremy makes a 130km round trip to attend a day program in a larger town.
Currently, his travel costs are shared between his community transport provider and his day program. David has been advised that when Jeremy gets the NDIA, the transport allocation in his plan will be inadequate for the same service to be provided for free. A significant fee will be applied, and the provision will be less. David is concerned that Jeremy’s move to the NDIS will reduce his access to the community and, subsequently, his quality of life.
Under Ageing, Disability and Home Care (ADHC) funding arrangements carers are able to accompany the care recipient when they travel. However, under the NDIS, funding will be redirected from the service provider to the client. As a result, funding previously available to cover a carer’s use of Community Transport may soon become unavailable, requiring carers to absorb the costs of their own transport.
Whilst Commonwealth Home Support Program (CHSP) funding continues to subsidise carers accompanying a person who is over 65 years of age, Carers NSW is concerned about carers who do not qualify for community transport subsidies.
Recommendations 8 & 9:
- Carers NSW recommends that the Committee urge the NDIA to:
- urgently review their modelling of transport costs for people with disability, including those in regional, rural and remote areas, taking into account the withdrawal of block funding;
- increase funding for transport within NDS plans.
Recommendations 10 & 11:
- Carers NSW recommends that the Committee advise the NS Government to:
- continue to block fund community transport, especially in regional, rural and remote areas;
- consider expanding the subsidies available under the Taxi Transport Subsidy Scheme and Companion Card scheme.
Accessible environments
The NDIS (Supports for Participants) Rule 7.20(d) states the NDIS will not be responsible for “the improvement of community infrastructure, i.e., accessibility of the built and natural environment, where this is managed through other planning and regulatory systems and through building modifications and reasonable adjustment where required.” Further, Rule 7.22 states that:
“The NDIS will not be responsible for: ensuring that public transport options are accessible to a person with disability, including through the funding or concession to people with disability to use public transport; or compliance of transport providers and operators with laws dealing with discrimination on the basis of disability, including the Disability Standards for Accessible Public Transport 2002; or transport infrastructure, including road and footpath infrastructure where this is part of a universal service obligation or reasonable adjustment (including managing disability parking and related initiatives).”
Carers NSW believes the NDIS assumes too much about the accessibility of state and local government funded transport infrastructure, which is known to be widely inaccessible, especially in regional, rural and remote areas.
Recommendation 12: Carers NSW recommends that the Committee put pressure on the NSW Government to increase its commitment to making transport infrastructure accessible.
- CONSISTENCY
Consistency has been a major stumbling block in the NSW rollout of the NDIS across a range of contexts. Countless carers have complained of inconsistent information and communication from the NDIA and disparities in planning processes and plan inclusions have caused much frustration and confusion, and have fractured many carer groups and networks across NSW. Perhaps the biggest consistency issue identified by Carers NSW has been the divergence between how the NDIS is presented as working, and how people on the ground tell us it is working (or rather, not working).
3.1 Information
People with disability, their families and carers seek information about the NDIS from a variety of sources, including the NDI website, NDIA staff at varying levels, LACs, ADHC staff, the NSW Government’s NDIS website, NGOs and their websites and workshops, and social and mainstream media sources of varying reliability. Unfortunately, since the Hunter trial, a lack of up to date, accessible official information from the NDIA has led to widespread misunderstanding, confusion and frustration across NSW. Key issues identified by Carers NSW are addressed below.
3.1.1 Lack of clear communication regarding the differences between jurisdictions
For example, the NDIS Grassroots Facebook group is populated by participants and carers across Australia, and those who post comments hardly ever identify which rollout site they are in, which generates unnecessary confusion and fear for people in other areas. It also indicates, however, the national inconsistency of information and experiences.
Another example of this was the national rollout of NDIS Understanding train the trainer workshops by the Australian Federation of Disability Organisations (AFDO) Disability Loop project in 2016. While these workshops were comprehensive and the first attempt by any organisation to provide consistent information to the sector, the information communicated at the Sydney workshops was not tailored to the NSW context, which was particularly problematic in terms of how the LAC role was described, as this works slightly differently in NSW.
Final Recommendations
Finally, the NSW Government created its own NDIS website and resources – available at www.ndis.nsw.gov.au – which in Carers NSW opinion are superior to those available on the national NDIS website. Based on consultation with the sector, the NSW Government resources are easy to navigate, written in plain English, translated into community languages and culturally appropriate formats. However, few people are aware of this website, and it is not actively promoted by the NDIA. Furthermore, the URL is so close to the national website that one wonders why these sources were not combined.
Recommendation 13:
Carers NSW recommends that the Committee advise the NDIA to work with the NSW Government, along with other State and Territory governments, to better incorporate their own resources into the national website.
Lack of training and awareness of NDIA call centre staff
Carers NSW staff, carers and service providers have constantly reported concerns about the level of training and competency of employees at the NDIA call centre who are responding to inquiries via the 1800 number. We have frequently heard of blatantly incorrect information being provided, including information that contradicts prior and subsequent advice from other call centre employees and more senior NDIA representatives. In particular, call centre staff have often simply referred callers back to the website or read aloud website information that does not address their question, despite the fact the call was made because information available on the website did not address the caller’s specific query. Some have demonstrated a lack of awareness of key information about the NDIS and even parts of the website. As reported in our ECEI submission, Carers NSW Better Start program has received a number of inappropriate referrals from the NDIA in recent times, as well as calls from carers citing completely incorrect information given to them about Better Start and ECEI. Waiting times have also been a key issue for carers seeking information, which have eased since opening hours were extended.
Recommendation 14:
Carers NSW recommends that the Committee urge the NDIA to expand training content, and introduce regular briefings, to increase the standard of call centre information and advice.
Difficult to navigate and hard to read website information
Carers NSW Submission
Carers NSW has long been concerned about the accessibility of the NDIS national website. Despite a number of upgrades since its launch in 2013, it is still incredibly difficult and unintuitive to locate useful resources, even for workers in the sector who have a strong knowledge of the NDIS. While some resources have been translated into community languages and Easy English, the bulk of information on the national website remains overly complex and inaccessible to the average reader. As a result, organisations like Carers NSW find ourselves continually having to explain and ‘translate’ NDIS language and resources, or present them in alternative forms, such as through direct links from our own website.
Recommendations 15, 16 & 17:
- conduct a full audit of their website for accessibility, useability and readability, in consultation with users and stakeholders;
- develop a communications strategy, including policies and procedures around use of language, in consultation with users and stakeholders;
- learn from the NSW Government’s example of sector consultation and plain English resource development.
3.1.4 Lack of communication with the sector
Overall the NDIA has not prioritised the kind of two-way communication with the sector that is needed for information to trickle down to potential participants and their families and carers. NDIA regional engagement teams have appeared at many community events and run a range of workshops and information sessions, and the NDIA national office has broadcast occasional webinars on topics of interest.
However, almost without fail, the information presented by NDIA representatives in this context has been very basic and overly positive, with representatives neglecting to provide satisfactory answers to specific questions and failing to acknowledge the very real issues being experienced by many people on the ground, greatly damaging the NDIA’s perceived credibility among service providers, participants, families and carers.
Furthermore, the number of opportunities for service providers, participants, families and carers to hear from NDIA representatives have been inadequate to meet demand, leading service providers and peak bodies to fill the gap by creating their own pre-planning workshops and information sessions. Because there has been no clear avenue for communication with these organisations by the NDIA, they have remained out of the loop, having to pick up bits and pieces of information wherever possible.
Despite their best intentions, this has sometimes resulted in conflicting and out-of-date information being conveyed, increasing confusion and angst among people with disability, families and carers.
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some cases, service providers presenting this information has resulted in conflict of interest, with the information provided being biased towards the service offerings of the particular provider.
Recommendations 18 & 19:
Carers NSW recommends that the Committee urge the NDIA to:
- create a sector engagement strategy to set up regular, accessible opportunities to share information with the sector and gain feedback;
- establish and promote a single, clear pathways for service providers and peak bodies to ask specific questions about the NDIS rollout and receive accurate, authoritative answers.
3.2 Planning process
3.2.1 Stakeholder inclusion
Carers NSW has received mixed messages from NDIA representatives, service providers and carers about whether or not participants, carers and Elizabeth cares for her adult daughter supporters/advocates are encouraged to participate Leonie who has a mental illness that in planning meetings. In some cases, carers have affects her insight. Someone been excluded. In other cases, participants have representing the NDIS rang to speak decided themselves been excluded, either because the to Leonie and asked if she was well; planner has told the carer that they do not need to she was that day so she said yes. The planner said ‘Well, I don’t think you’ll be eligible.’ She heard Elizabeth in the background and asked who was speaking. When told it was Leonie’s mother, she said, ‘Oh, we don’t need to speak to her.’
Recommendations 20 & 21:
Carers NSW recommends that the Committee advise the NDIA to:
- develop and publish a clear policy regarding when, and how, various stakeholders may be appropriately included in a planning meeting;
- keep LACs to account regarding the above policy to ensure practice is nationally consistent.
3.2.2 Mode of delivery
There has also been considerable inconsistency in how planning meetings are being conducted. Many Ariana cares for her daughter Jocelyn carers have reported being pressured into and was forced to participate in a developing the plan over the phone, even when phone based plan review. She was they have continually advocated for a face to face given one day’s notice, with no meeting. Carers NSW staff have also heard mixed flexibility, despite the fact that they messages from NDIA and LAC representatives had just moved and were still about this. LAC providers in NSW have consistently unpacking. The planner was said that their default is a face to face meeting in an unpleasant and made her feel very environment of the participant’s choosing, and that pressed, to the point of tears. The the meeting takes around an hour and a half on conversation was 30 minutes on the average. NDIA representatives have frequently said dot, and Ariana was cut off mid- that phone based planning is preferred. In real life, sentence. “That’s all we have time we have heard of many, many cases where carers for”, said the planner. When the plan have ended up having a rushed phone came back, the funding allocation conversation instead of the model suggested had been reduced by three quarters, on above, regardless of what they ask for. Carers placing Ariana’s employment at risk. NSW welcomed David Bowen’s recent commitment to increasing face to face interaction, but wishes to emphasise that this must be consistently enforced to ensure equity, and should also be applied in the context of plan reviews.
Recommendation 22:
Carers NSW recommends that the Committee advise the NDIA to mandate the option for
face-to-face planning and review meetings in an environment of the participant's choosing.
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most or all of their respite funding and vacation care following the review process, utterly compromising their personal wellbeing and, often, their ability to continue working.
Carers have also reported gross inconsistencies between what they ask for and discuss with the LAC and what comes back to them in the approved plan. Sometimes basic information is completely incorrect, in other cases whole items have been left out, or inappropriately included. There has been recent discussion regarding the potential re-introduction of draft plans, which may address this issue to some extent. However, LACs have told us that even if they include and advocate certain items, such as support coordination, when the plan is budgeted by the NDIA and compared with the typical packages (previously known as reference packages) that are used to determine what supports are reasonable and necessary, things can change beyond their control.
Recommendations 23, 24 & 25:
Carers NSW recommends that the Committee advise the NDIA to: - be more transparent about its use of typical packages; - give more authority to LACs to recommend needed supports; - enable participants to view draft plans both following the LAC planning meeting AND the NDIA’s budget allocation, reintroducing the requirement to have the participant or their representative to sign off on the plan.
3.2.4 Plan implementation
Although LACs are supposed to conduct information gathering and plan implementation in NSW, many carers and service providers have advised us that the latter function is not being performed. These allegations should be investigated, as plan implementation support is sorely needed, especially as only a small proportion of participants receive funded support coordination.
Recommendations 26, 27 & 28:
Carers NSW recommends that the Committee urge the NDIA to: - hold LAC providers accountable on the delivery of plan implementation; - consider increasing the funding allocated to plan implementation to ensure LACs have the time and resources to conduct it thoroughly; - expand the eligibility criteria for higher levels of implementation support via funded support coordination.
4. ROLLOUT OF ILC
Carers NSW determines that it is too early to comment on the rollout of the ILC in NSW. We only wish to state that we were very involved in the consultation process regarding the ILC policy framework and were disappointed to see the scope of carer-specific support under ILC funding greatly reduce over time. This will again create a gap in the services and supports available to carers.
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5. OTHER MATTERS
There are a range of other concerns Carers NSW has about the rollout of the NDIS in NSW, however these are less related to NDIS transition per se. Carers NSW therefore intends to make a submission to the Committee’s inquiry into general issues around the implementation and performance of the NDIS that addresses these matters in the coming weeks.
CONCLUSION
Carers NSW wishes to emphasise that we are supportive of the NDIS in principle, however we have major concerns regarding how the NSW rollout has been handled at both State and Commonwealth levels. We believe the rollout has been rushed, and that more in depth consultation and planning and a slower rollout schedule would have prevented the extensive service gaps that are now emerging. The evidence presented in this submission is just the tip of the iceberg in relation to what carers have told us. Overall, the NDIS has great potential to improve the lives of carers and the people they care for. However there is much room for improvement, which Carers NSW hopes will be addressed in the remainder of the transition period.
1 NSW Department of Family and Community Services (2016) National Disability Insurance Scheme – Hunter Trial Site Progress, June 2016. 2 Heads of Agreement between the Commonwealth and NSW Governments on the National Disability Insurance Scheme, section 33, signed by The Hon. Julia Gillard MP and The Hon. Barry O’Farrell MP, 6 December 2012. 3 National Disability Services (2015) ‘NDIS roll out begins in the Nepean Blue Mountains’, NDS, hhttps://www.nds.org.au/news/ndis-roll-out-begins-in-the-nepean-blue-mountains, accessed 17 August 2017. 4 National Disability Insurance Scheme (NDIS) – Bilateral Agreement between Commonwealth and NSW – 16 September 2015, http://webarchive.nla.gov.au/gov/20151020011806/http://www.coag.gov.au/node/525, accessed 17 August 2017. 5 Ibid, Schedule A. 6 Ibid. 7 NSW Health (2017) Our structure: NSW Ministry of Health, hhttp://www.health.nsw.gov.au/about/nswhealth/Pages/structure.aspx
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